How Are We Spreading Awareness


If you want to know what's happening at the Usher Syndrome Society, you’ve come to the right place.

Be sure to check back regularly to get our latest news updates.

The Usher Syndrome Society is excited to announce the launch of a groundbreaking awareness campaign titled "Every Second Counts." This campaign is a compelling call to action and a vivid exploration into the lives of those affected by Usher syndrome, a rare genetic disorder that causes the progressive loss of both vision and hearing. This campaign underscores the sense of urgency felt by individuals living with Usher syndrome, who are seeking to live full, meaningful lives, while actively striving to find effective treatments and ultimately, a cure. The USH Society will shine a light on Usher syndrome with a takeover in Times Square of 9 billboards and a commercial streamed on major platforms highlighting our USH Portraits and the face of the campaign, Rebecca Alexander.

For the past few years, the Usher Syndrome Society has been helping fund research at the University of Oregon as part of our Translational Research Grants. We are pleased to share this recently published study detailing the promising findings using Hexaflouro to slow retinal degeneration and improve visual function in zebrafish models with Usher syndrome type 1F. 

As 2022 comes to a close, we are proud to look back and see all of the incredible things that we have accomplished together.

It was very special to see everybody at the USH2022 Connections Conference in Austin, TX, which took place on July 8-9. We are so inspired by all the incredible work happening in the USH community. 

We had an incredible turnout at the Park Potomac lawn (even in nearly 100 degree weather!!) and we can't wait for our next HIIT class with OrangeTheory Fitness!

We are proud of Jeffrey Holt PHD, the chair of the Usher Syndrome Society Scientific Advisory Committee and Eliot Shearer MD, PHD, also a member of our Scientific Committee mentioned in this article. Jeffrey Holt says that "although the gene we targeted here is not an Usher syndrome gene, every step we take developing treatments toward any form of hearing loss, takes us a step closer with treatments for USH."

On November 20, 2021, Rebecca Alexander received the Future Vision Foundation’s Luminary Award for her advocacy work. The Usher Syndrome Society was recognized alongside Rebecca for our extraordinary commitment to raising awareness of Usher syndrome through photojournalism and film.

American Masters: Becoming Helen Keller examines one of the 20th century’s human rights pioneers in honor of National Disability Employment Awareness Month. The new documentary rediscovers the complex life and legacy of author and activist Helen Keller (1880-1968), who was deaf and blind since childhood, exploring how she used her celebrity and wit to advocate for social justice, particularly for women, workers, people with disabilities and people living in poverty.

The Usher Syndrome Society gathered with members of the USH Community, people living with all 3 types of Usher syndrome, and learned to dance!
We can’t think of a better way to celebrate Usher Syndrome Awareness Day than to share this story of joy, life, and community spirit.

This year, the Usher Syndrome Society took the virtual "Shine a Light on Usher Syndrome" exhibit to the next level. Over 100 portraits were displayed in a historic loft space in Boston, MA, and they used a high-tech camera to create a 3D walkable space.

We had an incredible evening at our Sight Sound & Strength event at Harpoon Brewery in Boston

The Usher Syndrome Society has gotten to know Shawn Hewson lately and we are proud to share his latest accomplishment!

Gene Therapy Tackles a Common Birth Defect: Deafness
After false starts, researchers are making progress toward treating deafness with gene therapy

On Giving Tuesday, the USH Society began our TACTILE holiday gift cookie sale with proceeds going to promote awareness of Usher syndrome.

On October 15, 2018, in honor of White Cane Day, we began our #CaneStrength campaign to celebrate the achievements of people who are blind or visually impaired and to bring awareness to the red and white cane which distinguishes the user as experiencing both vision and hearing impairment.

Donation to Usher Syndrome Coalition

In honor of global Usher Syndrome Awareness Day, 2018, we donated $10,000 to the Usher Syndrome Coalition in support of their efforts to connect families and researchers around the world.

We continued to spread awareness of Usher syndome internationally through our collaboration with UsherKids Austalia.

Tampa Bay was the last stop in 2018 for Rebecca Alexander and her ceremonial first pitches. On September 14th, her pitch tipped off a worldwide celebration of Usher Syndrome Awareness Day.

Rebecca continues to make her way around the country throwing out ceremonial first pitches. On August 23rd, she visited the home town of Usher Syndrome Society when she threw the pitch for the Boston Red Sox.

Following a successful first pitch for the Chicago Cubs in June, Rebecca Alexander threw the ceremonial first pitch for the Yankees on July 31st to raise awareness of Usher Syndrome.

Our pop-up “Shine A Light On Usher Syndrome” photojournalism exhibit greeted Doctors and Researchers as they entered the 2018 International Symposium On Usher Syndrome in Mainz, Germany.

This year, Rebecca Alexander threw the ceremonial first pitch at 4 baseball stadiums around the country to raise awareness of Usher Syndrome and to raise funds toward a cure. Her first stop was Chicago on June 9th.

Rebecca Alexander and the Usher Syndrome Society had an amazing event at Brooklyn Boulders in Somerville, MA . Rock climbing, high-intensity fitness class, USH education, portrait exhibit, food, Harpoon Brewery, wine and more. A perfect evening! We can't wait until next year's event.

Jake, Dad of 2 year old Rebecca invents a toy to begin teaching his daughter Braille at an early age.

The Usher Syndrome Society has partnered with Wicked Good Cookies to craft a beautiful cookie gift box featuring designs from our TACTILE Collection. Every Wicked Good Cookie box gifted gives back to help find a cure for Usher syndrome.
During this holiday season give a gift that truly appeals to your senses and brings awareness and funding to the loss of our senses - hearing and seeing

This holiday season we are illuminating some local Massachusetts communities with Christmas trees trimmed with portraits of people living with Usher syndrome and cookies from Wicked Good Cookies to bring awareness and funding to help cure Usher syndrome.

Sophia Boccard, diagnosed with Usher syndrome type 2a five years ago, was part of a recent collaborative effort to raise awareness of Usher syndrome in New York City. Usher syndrome, the most common cause of deafblindness, affects four out of 100,000 babies in the United States.

NBC Boston Health Reporter Kristy Lee did an amazing job bringing awareness to Usher syndrome through an interview with Hannah Corderman and her mom Nancy Corderman, Co-founder of the Usher Syndrome Society.

The Usher Syndrome Society will bring awareness to Usher syndrome with an outdoor exhibit in Washington Square Park in New York City

In order to own the Equinox for Usher Syndrome Awareness Day, UsherKids Australia, the Usher Syndrome Society, and the Usher Syndrome Coalition are collaborating to bring global awareness to the most common genetic cause of combined deafness and blindness- Usher Syndrome.